Melbourn schoolgirl with rare condition given new playhouse by Royston charity
PUBLISHED: 07:01 20 June 2019
A Melbourn schoolgirl with a rare genetic condition is looking forward to spending the summer in her new playhouse, which has been donated by a Royston charity.
Andy and Jenny Kulina's daughter Olivia has Phelan-McDermind syndrome, which is a partial deletion of the 22q13 chromosome.
As a result, the eight-year-old is non-verbal, on the autism spectrum, and has a host of health problems.
Andy told the Crow: "We can't leave Olivia on her own, she requires one-to-one care.
"It affects every part of our lives, even simple things like you can't put the dinner on if you're the only one in because someone needs to watch Olivia at all times.
"Her physical presentation does not look like someone with a disability, but when you spend time with her you can see she has a condition."
Andy was introduced to Friends of Royston Healthcare by town vicar Heidi Huntley. They were then invited to apply for a grant for a special project.
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Andy said: "What we really wanted to do was to build a safe and inclusive playhouse in our back garden that not only Olivia could enjoy, but was flexible enough so her and her sister Sophia could play together, as well as friends from the neighbourhood.
"The end result is pretty amazing, and it is giving Olivia a sense of independence.
"I can mow the lawn and get on with things while keeping an eye on her.
"Olivia having that ability to be self-sufficient is great, it gives her so much confidence that she can play by herself. I think that gives her a lot of joy."
John Davies is chairman of Friends of Royston Healthcare, which was formerly Friends of Royston Hospital.
He said: "While we continue to campaign for the retention of the hospital, our wider remit allows us to help those in the community with healthcare-related problems which - for one reason or another - are not being met by either the NHS, social services or increasingly the education services.
"We were delighted to be able to provide the funding for the purpose-built playhouse for Olivia Kulina which her consultant recommended would be beneficial to her wellbeing with her rare condition.
"We are very happy to receive applications from those in our community with an unaddressed health need ideally supported by a recommendation from a health professional submitted to firstname.lastname@example.org."